Colette Romero’s son is diagnosed with eosinophilic esophagitis (EoE), a rare disease. She discusses how, among the challenges that come with this condition, education has presented extra difficulties.
Education and EoE
School is different for children who are diagnosed with EoE.
Colette explains how when her son first started kindergarten in a public school, he was doing great. He had gained weight successfully at a the Children’s Hospital of Orange County where he took part in a one month feeding program.
Unfortunately, the adjustment to kindergarten was not easy. It was a brand new environment with new stressors and a lot of stimuli. Colette’s son stopped wanting to eat. Quickly, all of the weight he had gained in the program was lost again. He would come home after a day of school exhausted, overwhelmed, stressed, and so hungry. But despite his hunger, he couldn’t eat.
Colette tried to talk to the public school in order to set up some sort of plan that could help support her son. But the school essentially said that there was nothing they could do to help.
Eventually, they decided to try to get an individualized education plan (IEP). They hired a special education worker and got to work to get their son a plan which would help him succeed.
IEP
The IEP allowed Colette’s son to have an aide who could help him during every meal time. They would help reassure him, and help ensure he ate. The encouragement allowed him to concentrate and get the nutrients he needed.
With proper nutrition, he could focus more in school, he could participate, and he could actually learn. His behavioral issues went away, and his enjoyment for life returned.
The process was not easy. It took time, effort, and a lot of advocacy work. But it not only helped their son in the moment, it taught the school how much EoE can affect a child’s life and helped pave the way for future children coming through the school with a rare condition that requires additional support.
Colette’s son is now in the 3rd grade, and he is equipped with a 504 plan that helps support his nutritional needs. It ensures he doesn’t sit near people eating tree nuts due to an allergy, and it ensures that he gets the calories and protein he needs every school day.
Parents are often the best advocates, and when your child has a rare disease, often you have to be.
You can read more about Colette and her family’s story here.
